Menu

COPD and Other Stuff This is a patient-to-patient blog to exchange information and resources…from COPD to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between.

Tag Archives: Kitsap County

My hospice experiences have been an overwhelmingly positive,
including my own mother’s outstanding care from one in Gig
Harbor. Mike’s experience happened in Maine – and makes me
wonder how many other hospice patients around the country were and
are caught in this latest stress fiasco for terminal patients and
their family?

Greetings! Last month Mike MacDonald reached his six month
Hospice Care and was ‘discharged.” Mike and his wife, Pat, were
left hanging without medical insurance, no oxygen, medications,
nothing to pay the doctor or hospital should he need one. The
EFFORTS COPD community rallied to help.

Mike and Pat managed to work through their failed Hospice
system, but the lingering question is will it happen to us when the
time comes? Have patient safeguards been set into place?

One day it will be our turn for Hospice – How is
Kitsap County Hospice doing? With Harrison’s
hospice announcement recently in this newspaper, Kitsap County now
has two for choice.
The Hospice patient and family deserve Hospice CARE – not a toss
without medical coverage to sink or sink.
Following is Mike’s failed Hospice story
update:
##############################
“Hello friends — A quickie note this time.

For those following my odyssey of hospice-care to no-care, I am
pleased to post that all of my prior Medicare access has been
totally restored as of June 18. My hospice had been “paused” on May
28 with the intention that I would re-enter Medicare on May 29 and
return to hospice when I got a little sicker (my doctor’s crystal
ball said that date was most likely to be July 23rd lol). We of
course had the foul-up where my Medicare/CMS records weren’t
properly updated resulting in my having no coverage (prescription,
doctor, hospital or DME) for anything related to my lungs. I am
still waiting on the wheelchair to be replaced.

Thanks again to all who wrote/called their congress reps, etc. I
was touched and appreciative. We see over and over again what a
warm community this is where so many of us rise to help each other
often in spite of our own illnesses.

We had a visit yesterday from VNA of Southern Worcester County —
a small VNA office based here in Webster, MA with a satellite
office in Auburn, MA that provides palliative and hospice care
services. As of yesterday I entered their palliative care program.
My situation is not normal for them…they most typically step in
following a hospital admission. In theory, they will evaluate me
for re-entry into hospice services when the time is appropriate. In
fact, the “in-take” nurse that was with me yesterday wanted to
refer me for an evaluation right then but my wife wouldn’t hear of
it (more on that below) and I think it’s premature anyway.

My regular VNA nurse — whom I haven’t met yet — will stop in
today. Normally, there would be daily visits initially settling
back to 3 times a week when appropriate. I’ve already expressed my
wishes that we talk more like 2 times a week. They would be
responsible for palliative care which is essentially “comfort” care
but not quite so much as in hospice. That’s a little murky: while
under hospice, drugs are often dispensed in a manner that’s not
healthy over the long term with the theory being that the patient
is dying already and so longer-term consequences aren’t as
important. Under palliative care, they do care more about the
longer-term consequences and there isn’t necessarily any assumption
about death. In my case, the nurse and the doctor’s office will
have to work that out but some of my drug dosages are probably
already into the areas of unhealthy.

To my surprise, this *is* being covered under Medicare. CMS has
tightened access to at-home services with the goal being of
reducing in-home Medicare expenditures by 14% over the next 4
years. Learning that I seem to qualify for a host of in-home
services comes as a very pleasant surprise. I can get an in-home
health aid to help me bathe apparently — not that I want anyone to
help me that way. I am eligible for occupational therapy which I
believe for me means learning how to get around the home, how to
conserve energy, etc. I don’t know that I need or want those
services either but I’ll be open-minded. They also talked about
music therapy to my surprise…I would be likely to use that.

We had entered this with the intention of hiring a “private duty
nurse” paying out of pocket to lighten the load on my wife, Pat. I
was a little concerned because whereas Pat was talking about 2
hours a week, I suspected 2 hours in-home care was probably more
like 4 hours a week after factoring in travel, time talking to my
doctor’s office, etc. I could easily see this running $1000 a
month. No expense would be too high as far as Pat is concerned…she
was really traumatized badly by the disaster with the last hospice
organization (VNA Care Network which covers most of central and
eastern Massachusetts). Pat actually objected initially when we
talked about billing expressing a preference to pay this out of
pocket and not involve Medicare at all for fear that they would
screw things up so badly again. She’s really quite emotional about
this — and understandably so — but I also think there is no danger
at this point because we’re not signing away anything (whereas
entry into hospice signs away access to care for the terminal
illness to the hospice provider).

This does not bode well for when it’s time to go the hospice
route. I don’t think Pat will go along with that again but for now
I have to wait and cross that bridge when the time comes.

Physically, I’m not doing all that great though I think I am a
little better the past couple of days. One of the ironic things
about the May 28 discharge from hospice was that I was already
sliding into an exacerbation on that date. At times, I’ve been
fairly ill since then. Still, I don’t think I am near death. I
wouldn’t be shocked if that changed 3 weeks from now but I also
wouldn’t be shocked if I was writing the same thing 6 months from
now. My doctor feels I am dying but admits that I’m tougher than he
had thought. I am definitely progressing in the illness and not
happy with how compromised I am in my ability to do much of
anything.

By way of comparison, I have a friend who I started working with
in 1989. We worked closely for 7 or 8 years and remained in touch
since. He’s 54 years old and for 2 years has been battling an
aggressive bone cancer. He’s been through 5 surgeries now including
the replacement of his right pelvis with a bone from a cadaver. As
he expressed to me a couple of days ago via email, he really
shouldn’t be alive but he’s taking every day he can get and is
planning on getting a tattoo next month. I’m not one for tats but
good for him. When I think of my own illness, I have only to
compare myself to people like him and realize that I’m still a
pretty fortunate person…this could be so much worse. I have the
means and the support system to deal with this; beyond that, I
don’t have much control except for maintaining a positive attitude.
For the most part, I do just that.

Thanks for listening and sorry for my blatant lie at the top of
this note…I really *thought* it’d be brief.
Mike”
Michael MacDonald
:::Webster, MA

Dr. Melissa Mercogliano of The Center for
Orthopedic and Lymphatic Physical Therapy, in Port
Orchard, http://colpt.com/mam.html is the
person who helped us a few years ago and taught my husband and me
how to properly wrap my legs. She is a fountain of patient
information and goes out of her way to inform and
educate.

The National Lymphedema Network is proud to
announce the establishment of the Lymph Notes Scholarship.

In the United States, access
to treatment is still a critical factor for many lymphedema
patients. Outside of major metropolitan areas, finding adequate
treatment continues to be a major obstacle to care.

To help address the need for increases access
to care, this annual scholarship, generously provided in honor of
Lymph Notes, will cover up to $1,000 tuition for a healthcare
professional to obtain specialty lymphedema training and
certification.

The recent NAACP Health Fair at Olympic College was fun, a day
full of record rainfall, a little snow, great speakers and booths
crammed with information.

The program included a delightful parade of kids – tots to
teens modeling the latest fashions and we were later served a
delicious box lunch.

Thanks to the NAACP Health Fair, I had the opportunity to show
and tell about COPD (Chronic Obstructive Pulmonary Disease) and
what it can lead to…not good stuff. It was my pleasure,
thanks for asking.

Harrison Medical Center was not able to attend to offer early
detection COPD Spirometry testing – this time.

A quick glance around when I arrived showed a who’s who of
Kitsap County, including Bremerton’s Mayor, Patty Lent.

Hey, mom – I found you!

Let’s go THIS way – there is my mom!

Our lives begin to end the day we become silent about
things that matter.

Martin Luther King, Jr.

Thanks for reading… Sharon O’Hara (familien1@comcast.net)

Martin
Luther King, Jr. DayWikipedia:Martin Luther
King, Jr. Day is a United States federal holiday marking the
birthday of Rev.→

Why does a 6-day supply of Azithromyicin
tablets individually encased inside a tough to open Z Pac cost the
pharmacy less money than getting the medication in bulk and
dispensing it 30 or 60 tabs to a container?

Above – so called cheap packaging…

Instead, Costco pharmacy has to pay more for
less packaging. The Z pacs hold only six
tablets in each bulky booklet form and I have to battle to get each
one out. I was only able to punch one tab out of the Z Pac –
before getting the scissors out and cutting my way around each
tab…Not an easy task …my fingers are not working right.

I wonder why a package so difficult to open, obviously costing
more to manufacture than plain tablets, costs the pharmacy less
than getting it in bulk form.

The patient pays the penalty.

Above – so called expensive packaging….

Has Obamacare arrived in Kitsap
County?

Does anyone know what is going on and how I can get the
Azithromyicin in bulk form?

Glimpses of a patient’s life and the medical folks who helped
save my life. The University of Washington Medical
Center(my lung doctor is here) and the Cancer
Alliance of Seattle worked together to give me a life
again.

One of the cheeriest technicians I have been around is right
there at the University of Washington Medical
Hospital.Washington State first
class teaching hospital. The U – students and staff – alike
is loaded with inquisitive, open minded, brilliant medical doctors
teaching students to seek answers to patient’s medical woes.

Of the tremendous group of my tumor surgical medical team, this
superb doctor stood out by his mention and appreciation of my first
iPad covered Otter when he spotted it at my bedside table. I
appreciated his comments and conversation about a non-medical
related product. Btw… I think younger people are generally
surprised many of us older folks appreciate and use new
technology.

The view from my window was of one of my favorite bridges, the
Montlake Bridge by the U. Beautiful views helped
lessen the pain.

Need you ask? This is without doubt the best-arranged
toilet area of any I have had the privilege to know and love. The
shower is just on the other side of the low wall. The toilet
was at a comfortable height and I let go of the walker, hung on to
the low wall, and grasped the support bar on the other side.
I gently lowered myself and my new equipment onto the throne.

The day I was standing by the bathroom door when my incision
opened and the blood flow began through the popped seal to the
machine. The bloody fluid flowed through the fingers I had
pressed against the gaping open belly wound trying to hold stuff in
where it belonged. Instead, bloody fluid flooded the
floor and formed running rivers downhill through my room.

The professionals who answered my call light moved swiftly to
stem the bloody flow and no one raised a voice in alarm – not
one. I was immobilized in place hanging on to the pole with
one hand and feeling the warm blood rush through the fingers of the
other. The warm blood flowed on down my legs while they
quickly, quietly told me where to move. They did their job
with aplomb and took care of a horrified patient…like another
normal day. I had an incredible feeling of well-being in
spite of the thought other belly parts and stuff might flow past my
open fingers over the wound trying to hold back the blood
flood.

Checkout day… the dried remains of one of the bloody flows
remain under my soon to be vacated bed.

…Inhalers are important to lung patients.
The order we take them is also important. I mention it here
because my inhalers are rarely dispensed in proper order for the
full benefit of my lungs. Luckily, I know the right order to
take them and do pass on that information.

I take Foradil first – a fast acting inhaler
few nurses have heard of. It is one of the best for me –
opens my airway fast. Spiriva is long
lasting and second, while Qvar (inhaled steroid)
is third.

Harrison Medical Center, University of Washington
Medical, and Martha and Mary in Poulsbo – none
dispense Foradil…and I do not understand why.

I hope patients and med dispensing folks using other inhaler
combinations see they are taken properly.

One nurse told me she did not know there is a proper order to
taking inhalers. Why not? One possible
answer… If I were in the cancer area recovery, the nurses
would be cancer oriented, not lung patient oriented for
inhalers.

One of the terrific and friendly docs from my informative
medical team. Another super University of
Washington/Seattle Cancer Care Alliance doctor that I
cannot name due to misplacing my notes/business cards.

Kristin, physical therapist…

Meet Gretchen, one of the outstanding
nurses I had and now, my discharge nurse. She is putting
together the little vac machine that will collect the fluid from
the tube sealed inside the unstapled lower belly surgery
site. I will wear it day and night for the next few
months…while Harrison Home Health nurses will change it out every
three days, per doctor orders.

Gretchen showing how the vac – the entire
devise works.

Gretchen read directions and showed me how to change the
container when it got full of the bloody belly fluid. I was
told an alarm would sound first giving me plenty of time to take
care of it.

That said…My first and primary medical condition involves my
lungs – COPD first and
Sarcoidosis second. I will not do any
surgical procedure that involves anesthesia without my
pulmonologist as part of the discussion as a consultant.
While Karen Eady, MD, is my wonderful primary
doctor, right here in Kitsap County, Christopher
Goss, MD is my lung doc at the U .
Thanks to you all!

Harrison Home Health. Part 4 of 4,
next time.

Thanks for reading… Sharon O’Hara

Good-bye and thank you, Lisa Marie. You’ve moved on to
a fabulous person and forever home, and we’re grateful
for the eight years we had with you. Mom S

Yesterday I graduated from Harrison Home Health
services; an organization I didn’t know existed two months ago and
where I learned firsthand that Kitsap County has
the greatest group of RN’s and
LPN’s
on this planet for medical home
care.

My June 11, 2012 belly tumor operation at the University
of Washington was a rip roaring success, thanks to
surgeon, .Renata R. Urban, MD and her superb
medical team.

Six days after the operation I returned home to husband and dogs
and into the caring, capable hands of the Harrison Home
Health services team.

The Harrison Home Health services team followed
doctor’s orders exactly – a team care RN or
LPN came every three days to change the dressing,
including weekends. The vacuum machine hooked to and inside
my belly became my best friend 24/7.

At 73, I am lucky to be alive. I’ve learned several health
lessons along the way since 1997 – the key one being to continue to
do whatever I can to promote early detection
Spirometry testing for COPD.(Chronic
Obstructive Pulmonary Disease) the third leading cause of
death behind heart disease and cancer.

Getting COPD for many of us means taking a
nosedive into the immune system and developing
other unpleasant medical conditions. COPD is slow
developing, taking about twenty years to develop symptoms enough to
tell your doctor. By then usually 50 % of the lungs have
flipped from the healthy state – they are destroyed.

The fact is I was a healthy physically fit person until I was
hospitalized with COPD in 1997. Since then I
have gathered one disease after another.

This latest – a fluid filled belly tumor squeezed my lungs
making it harder to breathe. It squeezed everything in its
path and seemed to shut down my system with a growing hard belly
and pain especially in my bone on bone left hip until I reluctantly
shuffled from place to place. I canceled and rescheduled doctor
appointments thinking the pain would ease with time.

As time passed and my ability to get around decreased, Chuck
called various agencies in Kitsap County thinking
Kitsap County must have public transportation with a lift available
for patients trying to get to medical appointments. The
problem was I could not lift my left leg to step up and couldn’t
use the right leg either – too painful on my left hip. I
could not lift it…only pull it after me.

We discovered one source in Kitsap but it would
cost us over $400. to drive around from
Poulsbo through Tacoma to the
University of Washington Medical Center for my
lung appointment.

It felt like something was growing in my belly but the only
possibility was impossible so I shrugged it off to
imagination. I never imagined a tumor nor
mentioned it to my doctors.

Funny thing, a complete physical might well have discovered the
hard as a rock-growing belly and tumor, had I not sworn off getting
physicals.

It was only when I tried to cancel and reschedule my third week
canceled appointment in a row with my pulmonologist,
Christopher Goss, MD at the University of
Washington Medical Center that I was told ”…couldn’t reschedule for
the foreseeable future…” ( the doctor was off to Europe the end of
the week)

I told my husband we had to make that appointment no matter what
happened because I didn’t think I could manage much longer.
We HAD to make that appointment and I asked him to get what I
thought would help get me into the Suburban.

It included tying a rope across the back of the front seats to
pull me into the back seat once I shuffled my way up the dog plank
and it should balance me into turning to sit down. The plank
was supported by the borrowed Poulsbo Wal-Mart
milk crates he placed underneath the plank.

I shuffled up the plank aided by my walking sticks but the rope
failed after I pulled myself inside and let go of one end.
The rope wasn’t tied off and I fell forward and twisted with my
neck strained across the top of the back seat.

As soon as I could talk, I asked Chuck to get in and drive
“We’re making my lung appointment…we’re going to Seattle and
ferries don’t wait.”

At the UW’s parking garage, Chuck ran to get a wheelchair and I
pulled myself out of the car and into the chair. He raced us
to my appointment on the third floor.

I told Dr. Goss about my hard belly and the
pain. Thank heavens he looked. When my hard belly
wouldn’t budge, Dr. Goss scheduled an x-ray and
blood testing. The x-ray showed up black and by the time
Chuck wheeled me out of the blood lab, Dr. Goss
was there and told us I had a room and that an
ultrasound was scheduled in a few hours..

Most medical folks are cool about letting me take photos and
allowing me to use them here once I explain about my purpose –
COPD and Other Stuff.

Its important that people understand that COPD
is only the beginning – an opening door to really nasty, painful
medical conditions that follow for too many of us.

Ask your doctor for an early detection Spirometry
test. Please.

COPD itself is a long slow smother – not
painful. Some of the medical Other Stuff can be really
nasty.

Dr.Salahi will be a wonderful
Radiologist if patient rapport
matters. He did a super job of making me feel at ease during
an intensive pre-patient interview. I am glad for the
opportunity to meet him on his last day in Internal Medicine.

Dr. Jackson was a bright spirit this day and
every time she visited after the operation. She and the other
docs were incredibly verbal, friendly and informative…Just what
this patient would order.

Thanks for reading…Sharon.

Part 2 of 4 Next time… the machine that acts like
a sump pump was inserted into my belly and more ….

Olympic College pinned their 2012
Nursing School graduates Saturday, 9 June 2012 at
Bremerton High School auditorium.
Enthusiastic family and friends filled the school and I was
surprised to see the number of nursing volunteer mentors of our
Kitsap County new nursing graduates as they were
called to stand up in recognition of their two-year scholastic
efforts.

From personal experience, I know the caring, giving nature of
the nursing staff at Harrison Medical Center but
had not realized so many Kitsap County nurses gave heartwarming
volunteer involvement with the nursing students at OC.

The class
of 2012. Pinning,Chris Stokke, RN,
MN

Proud brother, Uriah Hawkins and his son, Gabriel watches
the ceremony. Wife Christine and mother of Gabe could not attend –
she was working with patients at Harrison Medical
Center.

Josh Peglow and son, Malachi. Health care runs in this
family. Josh works with patients at Martha and Mary
Rehabilitation and Nursing Center in Poulsbo as did his wife,
Shantie before she entered the nursing program at Olympic
College.

Gabriel and Aunt Shantie

Laughing new graduate and her new nursing pin

Shantie and Josh Peglow and children, Cheyenne and Malachi
join good friends, Deborah and Wayne with children Chris, Nick,
Rebecka and Caroline

Glen and Kim Peglow and Shanties Aunt Julia Booth

The
Nightingale Pledge

“I solemnly pledge myself before God and in the presence of this
assembly to pass my life in purity and to practice my profession
faithfully.

I will abstain from whatever is deleterious and mischievous, and
will not take or knowingly administer any harmful drug. I
will do all in my power to maintain and elevate the standard of my
profession, and will hold in confidence all personal matters
committed to my keeping and all family affairs coming to my
knowledge in the practice of my calling. With loyalty will I
endeavor to aid the physician in their work, and devote myself to
the welfare of those committed to my care.”

This is a public thank you to my primary doctor, Karen
Eady, MD and a story of what can happen when a patient
refuses their doctors advice.

I’ve never liked full physical exams, mostly because of the
vulnerable feeling I had with my feet in the stirrups and my bare
bottom edging over the end of the exam table and some years ago
(after gaining all the weight after COPD and
quitting a forty year smoking habit) I said NO to more physical
exams.

I told my doctor I didn’t want to have another pap smear or
physical, nor did I want my two memories squeezed in a
mammogram vise any longer. Year after year, she
asked and I said, “no, thank you, Dr. Eady.”

It doesn’t matter how I justified my refusals, year after year I
made the choice not to have them.

The trouble is- I now have a huge mass, cyst, tumor, whatever
you want to call it that didn’t grow overnight. The chances
are a physical exam would have caught it earlier.“tumors are
often found during routine gynecological exams”

Karen Eady, MD is an Angel on Earth right here in Kitsap County
– Bremerton to be exact –and is my primary doctor. Dr. Eady
was kind enough to take me when I asked her after Dr. Steele died
over a decade ago. She has kept me on and advised me ever
since even though her specialty is Diabetes and I don’t have
it.

Wasting time in regret is pointless. I’m writing this here
to suggest that sometimes the consequences of our medical choices
become chickens coming home to roast.

I am also thanking Dr. Eady for all the years she has put up
with me – not always a good patient or a prompt one.

God Bless you, Dr. Eady.

Thank you for all the years you have helped me move from one
medical thing to another. Additionally, thank you for the
great people you recommended who have helped guide me through this
COPD and Other Stuff.

In addition – a new lung connection in the newly completed
20-year study found that COPD patients are five
times more likely to develop lung cancer than
normal lung folks are. The warning is to offer Spirometry to
detect COPD in the early stages to cut cancer and COPD
deaths. The investigative paper gave the shout-out in the
prestigious European Respiratory Journal.

“It comes as an exclusive investigation by GP found a lack of
PCT investment in the gold standard treatment for
COPD is undermining patients’ quality of life and
increasing practice workload.

Around one in 100 patients with the chronic disease
developed cancer, compared with one in 500 without lung
impairment.

Testing the lung function of former and active smokers would
identify COPD earlier, thereby improving early detection of lung
cancer and improving survival chances, it found.

Lead author Yasuo Sekine, of Tokyo
Women’s Medical University, said: ‘The findings from
our analysis suggest that early detection of COPD
in addition to lung cancer screening for these patients could be an
effective detection technique for lung cancer. However, further
research is still needed to determine the selection criteria for
COPD and lung cancer screening.’

Monica Fletcher, chairperson of the
European Lung Foundation, said millions had COPD
but it was often undetected.

‘People frequently ignore the symptoms of lung disease and
leave it too late before going to the
doctor,‘ she said. ‘This research
highlights the need for routine lung function tests, known as
spirometry, to help improve quality of life and identify other
conditions that could be present.’

Professor Klaus Rabe, president of the
European Respiratory Society, said ‘On World
COPD Day, we would also urge European governments to improve early
detection of respiratory diseases, such as COPD.’

Meanwhile, patients’ respiratory associations across Europe said
governments must work harder to reduce the £28 billion annual cost
of COPD.

Proposals from the European Federation of Allergy and
Airways Diseases Patients’ Associations to reduce this
burden include listing COPD as a warning on
tobacco products, improving access to spirometry and funding
research on how to avoid exacerbations.

The Better Breather’s Respiratory Support Group
meets today at Harrison Silverdale -in the Rose
room from 1:00pm – 3:00 pm. Pam O’Flynn will
introduce Harrison’s new Respiratory Clinical Practice
Educator, Martin Robin. I know the
meeting will be informative and lively no matter the topic and hope
to see you there!

“We welcome any community member with asthma, emphysema,
chronic bronchitis, sarcoidosis, asbestosis, pulmonary
hypertension, pulmonary fibrosis and the many more lung diseases
affecting our population, pediatric or adult.”

Today – at 5:30 pm – Bremerton’s Mayor Patty Lent makes
COPD, Kitsap County and Washington State history. She is the
first mayor in Washington State to present
Governor Christine Gregoire’s Proclamation
declaring November 2011 State COPD Month, to my
knowledge. Her generosity in recognizing the 3rd
leading cause of death in the US is precious by
recognizing today, 16 November 2011 as World COPD
Day!

District 3, Manette’s hard working effective and beneficial city
council member, Adam Brockus will present the
Proclamation to Karma Foley of Seabeck who lost
both parents to COPD. Karma’s mom had the
inherited type of COPD and with her oxygen tank,
went out of her way to help me with several
COPD/EFFORTS public meetings we put together a few
years ago.

This COPD historic event happens at 5:30 pm in the
Norm Dicks Government Building city council
chambers. I will be taking pictures for y’all and trying not
to let my eyes leak. Thank you!

I will ride a recumbent trike from Evergreen
Park to the NDGB or walk it instead…very cold and wet out
there.

Posts navigation

About This Blog

This is a patient to patient blog to exchange information and resources...from COPD (Chronic Obstructive Pulmonary Disease) to Arthritis to Cellulites to Sarcoidosis to Sleep Apnea to RLS to Psoriasis to Support Groups to Caregivers and all points in between. Written by Sharon O'Hara.